Sunday, February 26, 2017

Doing the scary thing

Last July, I opened up on the blog about something that I had always frankly tried to keep a secret. Although there are certain topics of my life that have always been off-limits and are not things I write about, there was one thing I held back on - not for reasons of privacy - but because of embarrassment.

And that, for me, has been my struggle with psoriasis.

You all had the most amazing reactions and responses when back in July 2015 I opened up about my skin condition (actually auto-immune disorder), my story and the phases I have gone through in my years of living with it. I talked about the various treatments I've tried and how I came to a point of accepting it. It felt liberating and I was overwhelmed with the positive feedback I received. But then, in the time since then, I have never mentioned it again.

In the year and a half since I posted that entry, I have done my best to stop some of the behaviors I had done in the past - such as cropping or deleting photos where my skin is appearing.  But I realize that I have never come back and talked about it, and some events in the past week have inspired me to do so.

So, how has my skin been since then? Well, there are waves where it is better than other times and my flares ups are not as apparent. The summers certainly help, although it by no means goes away completely. Despite my best efforts, I have still not found anything that seems to help at all. Some days I don't notice it, and some days I am horribly uncomfortable - just wearing clothing is painful and irritating and my skin itches and burns. It is hard to tell what affects beyond sometimes the weather.

So, have have I been mentally with it? Well, I wish I could say that the embarrassment and worry of what people think has gone away or that it has become easier to answer prying questions. But that wouldn't be completely true. However, on the positive side, I have not let it stop me from doing anything that I love as I continue to push myself physically with marathons, triathlons, and new adventures. But I do often feel embarrassed or ashamed and at times hold back on doing certain things or wearing certain clothes because of my skin. For example, I would never right now wear a dress or a short sleeved shirt on a date. I won't go swim with new groups of people because of my skin. And I am afraid to try new nail salons for pedicures, wondering if I will be turned away as I have been before.

Back in November right after NYC Marathon and a particularly rough period of time with my skin - lots of discomfort, pain, and a few embarrassing moments - I made the decision to give inject-able medications for psoriasis a second try. My dermatologist whom I loved, had left her practice, so I found a new dermatologist in Atlanta and began the process of getting approved by my health insurance. After weeks of working to get bloodwork done, submitting applications, originally getting denied, and then submitting an appeal - I found out on December 27th that I was approved... Only to then have my prescription medication change on January 1st and have to redo the approval.

Finally it all went through and last week, on Tuesday, February 21st - I received a packaged in the mail filled with ice packs and one small single use pre-filled dose of medication to inject into my body.

This was my second time trying an inject-able medication and although it was a different brand, I expected the appearance and the experience of if to be the same. In the past, the medication was self administered with a sort of pen looking device, where you never actually saw the needle. You held it up to your skin, pressed a button, and it would shoot down the needle then retract it. As someone who gets queesy at the sight of needles - this really helped me to be comfortable enough with the process to try it out.

When I opened the package on Tuesday, I was expecting the same experience. BUT, much to my surprise, what I opened up from that package was in no way hiding from what it was - a needle - and what I opened was a straight syringe. And it honestly scared the crap out of me.

When I opened the package, my stomach dropped a bit and I wasn't sure what to do because this device was brand new to me. I close my eyes during medical scenes of movies or TV shows. I turn away and do not look when getting bloodwork done or shots in a doctors office. I am not comfortable with medical topics and certainly am not the type of person to willingly stick needles into my body.

But here's the thing. There's a reason why I am writing about this on the blog today and it isn't just because I wanted to give you all an update about my skin and about my fear of needles.

This is a blog primarily about my adventures in sport - running and triathlon - and how that intersects with my life. And that's why I decided to write about this experience of opening up this package and being so scared at what I had to do.

The thing is - that I know how to face my fears. 

I know how to get through things that challenge or scare me. I know that I can handle things if I approach them in the right way and if have the right support. I have learned these things over the years through my efforts of marathon, triathlon, and pushing myself outside of my comfort zone with sports. Sticking myself with a needle is as much outside of my comfort zone as physically clipping and attaching my feet to my bicycle and rolling down the side of the road with traffic once felt.

My ability to handle scary things has improved so much over the years and I contributed much of that to sports. As much as it scared me, I without even thinking of it, went into a mode of figuring out how to handle the situation in much the same way I take on a lot of my athletic things that scare me.

So what did I do?

Well, first I made sure that what I was doing would be safe and got as much information as I could. I called my dermatologist. And I called the manufacturer of the drug. And I called the pharmacy that delivered the drug. I got more information and talked through instructions of what I should do and what options were available to me. Did I need to have training on how to inject this? Should I talk to my dermatologist? Is there anything I needed to be aware of with this type of injection and process?

Once I felt comfortable with the fact that I COULD do this on my own (medically.) I reached out to a series of friends and relied on my support network. And through talking to them, I made another big step - and that was simply, deciding that I WAS going to give myself the shot that evening.

Sometimes, just deciding you are going to do something is the hardest part. For me, I like registering for races because it is a definitive way of saying "I am going to do this." But sometimes things aren't as solid as a race registration, but you still just have to make up your mind mentally. "I am going to go on this bike ride even if it is 30 degrees out when start." or "I am going to try running on the trails tomorrow." and then you just take the fact that you decided to do something - and you do what you need to do to prepare for.

So once I decided I was doing it, I prepped for that. I made sure I had the things I needed. I watched a number of tutorial videos online. And I called in additional support from friends.

In my last post I wrote about my trip to Switzerland, I said at the end, "Maybe others can do [some things] on their own - but I am the kind of person who needs support and that's what works for me." I've also said many times before, that the support of friends has been critical to a lot of the training and races I have done.

I had three good friends who were giving me advice and support, but in order to actually execute on giving myself the shot - I also asked Brick if she would come over to be there for me. Brick has been at my first Olympic distance triathlon, my first Half Ironman, and she was there to support me as I gave myself my first shot with the needle. She came over, we watched a YouTube tutorial together, I gathered my supplies, then she helped walk me through step by step what I needed to do and I willingly stuck a needle into my stomach to administer the medication.

[Photo taken after I used the shot]
And you know what? It really wasn't that bad.

It was over in seconds, I barely felt it, and there wasn't even a drop of blood. Life continued on and that was that.

Now, of course, I write about this whole situation a lot more calmly and confidently than it actually was in the moment. I let my emotions take ahold of me a bit throughout the afternoon. I tried to procrastinate and avoid doing the shot even when Brick was here. And I felt a bit uneasy about it all throughout the rest of the night. But, I did it. Like anything, nerves are normal. Sometimes our emotions do get the best of us. And much like I tried to procrastinate giving the shot by suddenly having to wash all my dishes, I've often tried to procrastinate scary workouts by sitting in my car as long as possible! But what remains the same is that I got the scary thing done and I felt better about it afterwards.

So anyways, that's my little psoriasis update for you today, mixed in with a real life example/lesson of how all this crazy sporting stuff I do makes me a better person in every day life. How the lessons I learn by tackling a new type of race or new distance, can be applied to other areas. And also a story about how my friends are the absolute best support system around and always come through for me when I really need them. Thank you.

It will be a few weeks/month or so until I know if this medication will have actually done anything for me. But I am proud of myself for overcoming this first step. I never will intend for this to be a medical blog or to talk about psoriasis much in depth, but if you have any questions about it - please reach out and I would be happy to talk more.

Hope you all have a great week!

1 comment:

  1. So, inspiring Katelyn. Not just by doing the hard stuff, but for allowing yourself to be human all throughout!